We made it through Hurricane Sandy (the Frankenstorm) without any issues. The only thing we dealt with was a short time without power (while we all slept). We made sure to have Ellie's feeding pumps all fully charged, even her backup Joey pump before heading to bed. Then once they were charged she was not allowed to have them unplugged at all until the next morning.

So far with her GJ feeding tube, things are going great. She has already gained a full pound. This is the most weight gain she has had in over a year without prednisone. The home health nurse is coming again tomorrow to help make sure everything is still working as it is supposed to be. Last week when they came (one was being trained) they were able to help get the second pump set to the correct settings.

As far as school for the kids they missed almost a full week due to the hurricane, returned for Thursday, then they were all out on Friday and will be out Monday and Tuesday.  Ellie missed school on Thursday due to not having the needed paperwork from the doctors to allow the school nurse to do anything with her new feeding tube.

This new feeding tube has both a  j-tube or jejunal feeding tube and a g-tube or gastrostomy tube. The j-tube skips her stomach and enters that jejunum or the middle section of her small intestine between the duodenum and the ileum. This portion of the intestine is responsible for digesting nutrition. Normally the stomach begins the process of digestion, then moves the food to the intestines for complete the process and allow the nutrients to progress through the intestines into the bloodstream.

However, with Ellie, something is not happening normally. For her little body, the stomach digestion process has to be bypassed and started in the jejunum instead. this new j-tube is 45cm long and is placed into her intestines via endoscopic placement while the individual is sedated and is placed by a interventional radiologist. Another wards this is considered a surgical placement in an IR/OR (procedure room). Depending on the patient the J-tube placement times varies based on the intestinal placement.

With her J-tube she has her elemental formula (Neocate Jr) running into her body. She is now slowly gaining more energy. She also has her g-tube where we have been giving her medications and running Pedialyte when she has not been drinking as much.

She still amazes us with everything she has been through and the fact that she is always so happy and cheerful regardless. The other children too have been amazing. Not only with their sisters and brothers but everything we have been through as a family.